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episcleritis- painful inflammation of the eye

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Crohn's Disease
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Posted 7/9/2008 3:32 AM (GMT 0)
does anyone have episcleritis with their crohns ? I have a reoccurance of this on a weekly basis as soon as I taper off of the eye drops. It hurts very bad also. I have been on humira weekly dosing and low dose of pred. with minimal benefits now. (initial response was great but have lost response).
thanks,
jamie
Posted 7/9/2008 4:05 AM (GMT 0)
Jamie,

I am sorry to hear you are having problems with your eyes. I have Uveitis and I know that I have to do a slow tappering of prednisone eye drops or it just comes back quickly. As for the humira I can't help you I can't take it due to having problems with Remicade to include a cranial bleed.

Shoshanna
Posted 7/10/2008 11:34 PM (GMT 0)
I've also had eye issues - uveitis and episcleritis have both been diagnosed on occasion - I'm just tapering from another round of eye drops for uveitis that was particularly painful. I really sympathize with you. I'm on remicade and this is the first time my eye has bothered me since I started it (6 infusions ago). I always think of my eye problems as a window to my crohn's inflammation (when the eye flares - usually bad things are happening within too). I hope this isn't a sign that the remicade is not working properly anymore. (Although I had other indications that I might be developing antibodies and the effectiveness is reducing).

Thanks for starting this post.

Bev
Posted 7/11/2008 2:06 PM (GMT 0)
Those of you with inflammatory eye disease who may be losing response to biologics

might be interested in keeping this reference on hand: http://www.ncbi.nlm.nih.gov/pubmed/18344883?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

I've mentioned this case report before, but I think it worth repeating for those of you who have particular concerns about eye disease. It describes a patient with Crohn's and scleritis, as well as psoriasis that developed while on Remicade. (She'd already tried the other standard Crohn's medications.). Her scleritis originally responded to Remicade, but returned as she lost response to the drug. Remicade was withdrawn and she was started on total enteral nutrition (special liquid diet use for people with Crohn's) instead. Her psoriasis started to improve in four days, and she regained her vision in the eye affected by scleritis within three weeks. After reaching remission, she was able to maintain full remission on a maintenance regimen of two regular meals per day plus two meals of enteral nutrition per day. Granted, sticking with a liquid diet is not the easiest treatment for a disease, but it's good to know there is another treatment possibility out there if you run out of medications to try.

Posted 7/11/2008 2:53 PM (GMT 0)

Hi Jla,

I have had both Episcleritis and Scleritis.  Mine started a little over a year ago, with Episcleritis in both eyes.  I tried several drops--Tobradex, Fluromethalone, Prednisolone--and they would help, but then a few months ago, my left eye got really bad and the doctor said it was now Scleritis. 

I am currently on Prednisone and Methotrexate, to help with the inflammation.  I also am using Acular eye drops for the pain, as needed.

My heart goes out to you because both conditions are very painful and even when mine seemed to be going away, it always came back.  In fact, after having Episcleritis for about 6 months, I went to see my Internist and she immediately suspected Crohn's.  I was just diagnosed a few weeks ago (long story). 

I have noticed a link now to my eyes and my stomach issues.  Before I had even heard of Crohn's, I remember last summer, when both my eyes were bad, having bad stomach problems, but I always thought it was something I ate or a nerves, etc.

Please keep us posted and please feel free to ask me anything.

Take care,

Indigo

Posted 7/11/2008 4:59 PM (GMT 0)

Now this is all making sense to me !

Can you tell me who dx your eye issues...

I only had an optomitrist give me some kind of dx ; but he didn't know much about it because what he told me to do was making me worse ..then I saw a cataract specialist that is in the area where I work - he said it is strojens disease - but would not say it in writing or be definite about it ...but got me started on a steroid drop and lacerites. ( I finished with them about a month to 6 weeks ago )

Meanwhile I have had 3 infusions of remicade - and I didn't think it was working ..but my eyes have gotten better ...I still have to put the drops in each night and day or they will get bad again ...but I am not needing the $150 per month med ( thats with ins! ) that he prescribed as a forever drop !  

So...maybe they have really gotten better because of the Remicade ??? !

Well, I see a NEW GI next week ...hopefully he will know more of this disease then the other ?@$% that I was / am seeing ... I have been so patient with him and his office but just can't do it anymore ...they are simply incompetent .. and trust me I don't curse !! At all ! But this was easy to use those symbols to express my feelings tongue

Posted 7/11/2008 5:57 PM (GMT 0)

After 10 Remicade infusions, I'm finally on top of mine for now. I had to have a top specialist from Baskin Palmer Eye Institute in Miami lead me through the treatment after having my local Opthamologist plus a Retina Specialist give up. She said for treating the eye, Remicade should be given every 4 weeks for best results. After two retina detachments and going down to 20/400, mine is much better. But all the Prednisone I took this last 1 1/2 years really advanced a cataract I was growing. The cataract was removed June 5, and now my eyesight is 20/30 in the bad eye. I still watch my eyes like a hawk. If I get a "sinis" headache, like I thought the original pain was, I take a single dose of 50 mg of Pred instead of any pain killer. It works. I don't want it to get ahead of me again.

This was the worst 1 1/2 years of my life anticipating blindness.

Dave D

Posted 7/11/2008 10:20 PM (GMT 0)
My Optometrist first diagnosed the Episcleritis and when it was not going away, I went to see an Opthalomologist who diagnosed it as the same thing. 

When it got really bad, my Opthalmologist said it was Scleritis--he also said you can have both Episcleritis and Scleritis together, and he thinks that may have been my case in the one eye. 

Anyhow, he said that eye drops work for Episcleritis but do not work for Scleritis because it is a deeper inflammation. 

I really hope your new GI helps you!  My situation might be somewhat the same, in that my first GI did not diagnose me with Crohn's--I think she was looking for a biopsy that comfirmed Crohn's.  I saw the second GI maybe about a month ago, and he believes it is Crohn's and I had the small capsule done about two weeks ago.  My follow up with him isn't till August--ugh!  But I am thankful he is going to be willing to treat it!  He also believes that once I am on the appropriate medicine, my eye inflammation and arthritis will go away as well, and I hope they do! 

Take care and be sure to let us know how you are doing!

 

Posted 7/12/2008 4:26 AM (GMT 0)
the opthamologist diagnosed me with this. I see an opth. for my eyes bc he is a medical doc. and familiar with this condition in people with crohns. My GI doc. recognized what it was right away and referrred me to the eye doctor.

My doc. wants me to keep taking the humira and pointed out that I have almost completely weaned off prednisone since starting the humira. I agree that it is helpimg me somewhat. joint pains are significantly better. I am having a big increase in running to the bathroom, pain and bleeding. The inflammation is very painful in the bum !How much is the question ? He is very well known in my area for doing research in crohns.I trust him and think he knows whats best but I just want to feel better and do not think I am feeling as well as I could be. He is unsure about cimzia helping me anymore than humira. Tysabri is to risky for me. He wants to hold off on the stem cell treatment study for now. I feel like I am not sure what to do.
thank you all for your support ! This disease is very hard to struggle with alone !
jamie
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